Monday, 14 August 2017

The failure of post-diagnosis support

It’s
not often that the content of TV programmes stays with me, but the recent BBC
‘Hospital’ series, following the fortunes of patients and staff at Imperial
Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I
wrote about last month, both fall into that category.Documentaries
can teach us a lot, and even allowing for the selective nature of TV editing
and the luxury of being a passive viewer rather than a stressed subject with a
camera pointing at you, I feel it’s important that the learning from
these two programmes isn’t lost.The
third episode of ‘Hospital’ featured two gentlemen living with dementia.
Firstly we were introduced to Carl:

Narrator: “75-year-old
Carl has dementia. His family brought him to A&E after he became aggressive
at home. Yesterday morning he walked out of the hospital and was missing for 13
hours. The police found him wandering the streets alone and brought him back to
A&E.”

Dr Barbara Cleaver, Emergency
Medicine Consultant: “Three people to look after him at the moment including
security because he is in an unfamiliar environment, it’s noisy, it’s bright,
there’s lots going on. I suspect that’s really playing into his underlying
diagnosis and making things much worse for him.”

Narrator: “For his own
safety, Carl is being held in room Q, the space reserved for psychiatric
patients.”

My
alternative commentary would be:

“Carl, a gentleman living
with dementia, was missing his wife who for her own health needed a break from
24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find
his wife, lashed out at those around him through no fault of his own, and
without the skills and support they needed, family members took Carl to a place
they thought he would be safe. Carl, however, became disorientated in this
alien environment and went to look for his wife for reassurance and familiarity.”

Later,
we were introduced to Stanley:

Narrator: “85-year-old
Stanley has vascular dementia. This is his 4th admission in three months.
Around 25% medical patients treated annually by the Trust have dementia. They
are accommodated in a specialist ward until their social care can be arranged.”

My
alternative commentary would be:

“Stanley, poorly supported
in the community, has had repeated inpatient stays. At present Stanley does not require
acute medical treatment, and would undoubtedly have lived far better with his
dementia had his family and social care been properly resourced to support
Stanley from his diagnosis onwards.”

My
dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives
from different governments and significant investment into dementia education for healthcare
professionals via Health Education England. And yet we still have:

·People
attending A&E because it’s the only place guaranteed to ‘do’ something for
them when their family can’t cope with ‘aggression’ or the person has been
found ‘wandering’ (not my choice of language)

·People
with dementia being placed in rooms intended for psychiatric patients (that are
not remotely dementia friendly)

Add
in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was
living with dementia, Tom, was drugged and sectioned, and overall in both
programmes precious little sign of any choice, control, empowerment, peer
support, occupation or activity, life story work and other non-pharmacological
treatments, positive behaviour support or, frankly, anything I would be proud
of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By
the time a person attends A&E, there have potentially been numerous
red-flags that the family needed support. A dementia diagnosis in itself is the
first of these. Once things get so out of control that the person is in
hospital (which is one of the worst possible environments for a person with
dementia - it will only increase the person's confusion and disorientation making them
upset and/or angry), the effect on everyone
involved isn’t favourable.

Some
simple preventative advice and support could at best avoid, or at least significantly
delay, a person ever ending up in a crisis situation. Why do we not educate
families, at diagnosis and continually thereafter, about (in no particular
order):

·Making
their home dementia friendly

·Accessing
peer support and empowerment

·Occupation
and activity - The myriad of different options to keep busy and how to access
them

·Collating
and using life stories and other non-pharmacological therapies to support a
person experiencing changed behaviour

·Training:
For the person with dementia and anyone in the family unit who wants it.
Knowledge is power for many people. Knowing what is happening in the person’s
brain, how those changes could affect the person and ways of providing optimal
care and support (including self-care for the person with dementia)

·Carer
resilience - Ways of coping, identifying when you aren’t coping and sources of
support when you aren’t coping (that actually exist and respond)

Instead,
as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared
for in an acute mental health unit and visited daily by his wife, and Stanley was
settling in well to his care home. Would either of these gentlemen have chosen
these two places of residence? I doubt it. And from the perspective of the tax
payer, both are very expensive options (Stanley’s care home costs £1700 a week,
plus because of his ‘complex needs’, an additional £2300 for one-to-one care.
It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute
mental health bed costs).

Worst
of all though, is the cost in personal anguish for these two gentleman and
their families. We’ve only very briefly dipped into their stories, but they
represent examples being replicated every day of how a diagnosis of dementia can
needlessly lead to lives unravelling, all for the want of a holistic, long-term
package of what is comparatively low-level post-diagnosis support.

Ask
yourself: For a country aiming to be the best place in the world for people
with dementia to live, is that the best we can do?

Very well put Beth. I think ageism is at work there also. Part of the problem I think is the lack of support available out there - not many people want low-paid jobs that are often casual and without security, which is the lot of the Community carer.

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.